Discussions that mention prograf

Rare Disorders board

I am 37 and have been diagnosed with pyroderma gangenosum October 2005. I was pregnant October 2004 and had this gigantic red soar on my leg that I thought it was a spider bite that had gotten infected. The redness was almost all around my leg just above my ankle. I tried steroid cream. It worked awhile. They really couldn't do anything with me until May of 2005 after I had the baby. One week before delivering it was cultured and after having the baby within hours the soar opened up. The test came back and it was Staph infection. I was sent home with IV meds and in July of 2005 the dermatologist put me in the hospital for 2 weeks on IV meds (antibiotics). The doctor thought I had a fungus or something still infecting it. When I went home I was put on a Sulfa drug and seeing wound care specialists every other day until September 2005. I ended up to be allergic to the Sulfa drug and was put in the hopital again. I couldn't breathe and was put on prednisone and the inflammation was gone within 24 hours. I went to a different doctor and he diagnosed me with pyroderma gangrenosum. I started a regimn of prednisone and dapsone. I couldn't handle the effects of the dapsone and after six months of trying I was put on prograf, a anti-rejection drug. The soar finally was healed for just 1 month and I have broke out again in the last two weeks of coming down off the meds. They tell me that I will not have to be on the meds my whole life and I am beginning to disbelieve them. I swell and elevate and take 80mg of lasix to help keep all the water weight off. It is very painful and I have 4 little boys to take care of. I am getting depressed with all the weight gain and really feel like this is driving me crazy. If anyone can help I open to anything.